Understanding
Okur-Chung Neurodevelopmental Syndrome
OCNDS
Awareness Day
Every year, April 5th is International OCNDS Awareness Day. On this special day, OCNDS families and friends worldwide come together to celebrate the remarkable individuals affected by OCNDS and to raise critical awareness and funds for research aimed at developing effective treatments.
Why April 5th? April 5, 2016, marked a turning point in the lives of many. On this date, the first scientific paper describing Okur-Chung Neurodevelopmental Syndrome (OCNDS) was published. Initially, five children were identified in this groundbreaking research. These five individuals soon became part of a growing global community. To honor these first five patients, who finally received a diagnosis explaining their challenges with talking, walking, eating, and other basic aspects of daily life, April 5th was established as International OCNDS Awareness Day.
Why is Awareness Important?
Awareness is central to our mission. Knowledge has the power to transform lives. With awareness comes:
- Social acceptance and kindness: Small acts of understanding can significantly improve the daily lives of families facing OCNDS.
- Increased funding: Awareness drives research and advocacy efforts.
- Scientific interest: It inspires researchers, biotech companies, and pharmaceutical organizations to explore new treatments and cures.
- Action: Together, awareness and action bring us closer to understanding and treating OCNDS.
Goals for OCNDS Awareness Day:
- Educate medical professionals about OCNDS symptoms to encourage timely genetic testing.
- Inform educators, speech therapists, and occupational therapists to better support individuals with OCNDS.
- Connect OCNDS families with our support group to foster community and shared experiences.
- Highlight the unique challenges of rare disease diagnosis, treatment, and care.
- Advocate for increased investment in rare disease research.
- Emphasize the urgency of accelerating new treatment approaches.
How Can You Get Involved?
Light-Ups:
Apply to illuminate bridges, monuments, and other landmarks in our foundation’s colors, blue and green. For more details click here.
Proclamations:
Request your city, state, or country to officially recognize OCNDS Awareness Day through a proclamation. Learn how.
Ways to Celebrate on April 5th:
- Attend landmark light-ups and share your photos on social media.
- Wear green or blue, take a picture, and tag us with #csnk2a1foundation and #csnk2a1_foundation.
- Engage with and share our social media posts on Facebook, Instagram, Twitter, and LinkedIn.
- Make a donation to help improve the quality of life for those living with OCNDS.